Tiredness

Hi Eileen you suggested I might be better off taking a higher dose of pred till store closes I am currently on 10 mg I only have 5mg tablets so it would have to be back up to 15mg how long would you suggest I upped it too, it has been so manic at work I am exhausted and really feeling very low , I don't feel people at work understand exactly what this feels like , I have another two 8 hour shifts to get through yet and I'm worrying I won't be able to do it 

You can get a pill cutter from the pharmacy and a 2.5mg rise on alternate days might be enough without going right back up to 15mg. That's assuming you have plain white pred tablets - if you are on red enteric coated tablets you must NOT cut them.

You do need to ask for some 1mg tablets to be able to reduce in smaller steps though - it is far too far to go from 15mg to 10mg in PMR even if that is a normal reduction plan for patients on pred for other things. PMR is not other things! If you reduced from 15 to 10 mg just like that 2 weeks ago I'm not surprised you are struggling. 

Those of us who don't have to work really admire those of you with PMR who do - I worked and without pred but I was freelance and just had to stagger from bed to desk plus I chose the hours I worked! I'm the best boss I've ever had...

Yes I have the white tablets I am waiting for next appointment with rheumatologist  it will be 3weeks today since I dropped from 15 to 10 mg he has given me 60 tablets to last me till I see him next which he said will be in about 4 to 6 weeks then he mentioned dropping 1 mg a month I think it was, I haven't received my appointment yet, I feel so desperate I think I will take extra as you said tomorrow 

I know it will be quite difficult for you to face up to an expert - but you need to be able to do a smaller drop. And if you still have symptoms you cannot reduce from 10mg at any rate - PMR came when it wanted and it will go when it wants. You cannot "cure" PMR with a dose of pred, you can only manage it until it choses to go into remission itself.

Are you in the UK? Do see your GP and discuss it with him - if he will, he could give you a prescription for 1mg but some won't disagree with a consultant. You have a diagnosis, the GP could manage you from here but it is up to him.

Yes I am in uk . My GP suspected pmr as all the usual tests came back clear and my vitamin d is fine as I am on that for life having been deficient some years back but there was a raised level of inflammation in my blood so she said she would need to refer me to rheumatologist as treatment is steroids and she didn't just want to start me on them, rheumatologist said when he dropped me to 10 that if all is well when he next sees me than he will pass me back to GP to be managed, I am still waiting for appointment which should be no more than 3 weeks now so I kind of feel I don't know who to turn too 

Follow this link:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and about half way down the first post you will find a heading "Bristol paper"

If you can, print it out and take it to your GP and ask her to read it. Your GP is trying to cop out - she could manage you from the outset if she wanted to and this paper is a guideline for her to help her do that. It is written by rheumies for GPs. They recommend 6 weeks at 15, 6 weeks at 12.5mg and that smaller drop is often critical. We as a patient group have the experience that even that is a bit much, especially for a patient who must work, but it is far better than what your rheumy is intent on.

If you don't have your follow-up appointment already there is no guarantee that it will be that soon - do go and see your GP and be very clear with her how poorly you feel. Your GP is there as a mediator, that is what she is paid for and why she did her training. 

Thanks so much for your help Eileen I will do that , I have terrible brain fog at the minute so will definitely need to print this off 

Of course you have - PMR and pred will assure brain fog - if one doesn't do it the other will and both together... In fact - you should be off sick not working your butt off!

yesterday I took 12 and a half mg of pred as I had been feeling really low and weepy completely out of nowhere finding myself in tears very embarrassing, today I'm feeling in a better mood though still achy across shoulders and neck , I'm off work today so I'm taking it easy but I shall increase dose again tomorrow for my last shift in old store . I will be starting new store Monday then off for 4 days then in again hopefully things will settle down once I'm settled in

If you have the blue steroid patient card , which you should have, you can go to any chemist and ask for an emergency pack of steroid tablets. I did this when my handbag went missing and I asked for 'ones' that my doc said were not available. When I showed him the next day he then prescribed both sizes so I can manage myself quite easily.

I didn't know that Christine - what a very useful bit of information! Not that it would help me here as they don't have such a thing as a steroid card! 

However - how very sensible to provide your GP with some solid evidence of his intransigence!

No haven't read the spoons story but it makes sense , thank goodness for this forum as my rheumatologist just told me to carry on as normal it's best to keep active , he never once mentioned feeling tired he did say I might get a flare up but never gave me any info on what to do or whether to increase my dose I would feel so lost without you guys 

How do people work at the same time as PMR. I retired, then got it!

It's the being able to tell yourself 'NO' which counts.  If you don't learn that lesson, you will keep having bad days.

Spoons is good!

Rheumatologist never said I couldn't or shouldn't work he said carry on as normal it's best to keep active and that's what I have been doing once the pred kicked in I felt I had a new lease of life now I know I need to watch things I shall make sure I mention this when I see him next 

On second thoughts, I always had quite severe rhumatic problems whilst I was working. I tend not to consider it was anthing to do with PMR, because when that kicked in I was in agony, and finally totally paralysed down one side for a short while.

I think the secret is finding a balance.  If you are working that is probably good because it lends pupose to your life and is a distraction from being ill, but it does mean that there might be some things you would normally do outside working times that you now will have to give up for a while.  If you are able to, it is most likely best not to "become" one's disease.  I feel like so many of us have been pretty healthy most of our lives, we were never going to be invalids!  So we are in a bit of denial, wanting to carry on as always.  But, doctors notwithstanding, we really can't do everything we used to do.  At least not just now.  I've been quite happy giving up mowing the lawn for example, but maybe not so happy about not getting to every exciting thing offered in my city this season, or even to more than a couple of them

You have the right attitude and I'm sure you will learn to cope.

Good luck

If you want to read the spoon story - google "the Spoon Theory by Christina Miseriando".

Yes - exercise is good but not in the way your did pre-PMR. You must build up slowly to it and if possible avoid the actions that lead to a flare: repeated or sustained movements. You will probably manage to walk around the lawn with the mower always going forward with no obstacles but when you get to one of those difficult bits where you need to push and pull it back and fore to deal with a bit around a tree or in a corner those repeated actions will use the same muscles all the time and they will tire easily.

Training to do any action means using the muscle repeatedly, during which time small tears are created in the muscle which is part of the ache post exercise together with the formation of lactate. Normally that heals quickly, the lactate is removed and the muscle eventually "trains" to be able to do that all faster and better. In PMR that learning process doesn't happen as well, the tears take far far longer to heal and the lactate to be removed. Do the "training" over months rather than weeks and you will be able to manage the same eventually. In people who are highly trained anyway this process does seem to happen faster and they apparently recover quicker or are able to do more. 

But sitting and feeling sorry for yourself is one of the worst things you can do - get up and go for a gentle walk, increasing the distance/speed one at a time, same distance faster or longer at the same pace. Walk from one place you can rest to another, rinse and repeat - and you will get far further in bites of 10 minutes than if you try to walk for half an hour at ago. If you can find a warm pool, go to it and even if you can't manage an aqua class, just walk and do pretend weight lifting against the water - it takes 7 times as much effort as on dry land. I did aqua aerobics with PMR for 5 years without pred. I did it at my level, no competing with the others and with time I could do the same as the rest - all discussed with the instructor first. It kept me reasonably mobile, when I had to give it up because we moved somewhere without the same facilities the PMR definitely got worse.

I wish you, Eileen, would write a book on PMR from your experiences and others...thanks to this forum I found the Kate Gilbert book at Amazon and reading her personal experiences and her knowledge gained is so helpful though I know there is more that could be written...

maybe gather many of your posts and put in a book  

Best regards!

Layne

Chicken Soup for the PMR Soul!

Many of my posts were gathered and are in one place on another forum. There were a lot which were easy to find on this forum until it was revamped a few years ago - all disappeared. And anyway since people appear and post a question without reading what is already there - still rarely saves me rewriting them!.

But the book that lodger often speaks about is effectively just that - a compilation of the most important things.